Tlo57
Active member
- Joined
- Sep 16, 2017
- Messages
- 46
- Reason
- Lost a loved one
- Diagnosis
- 09/2017
- Country
- US
- State
- FL
- City
- Winter haven
I registered-joined this forum today after researching several other sites because I felt that it was genuine and informative. My 57 year old twin brother was recently diagnosed w/ ALS at Duke University. He was told that the degree of certainty is >90%.
He had an appt. in Knoxville w/ a specialist for a 2nd opinion who can't agree nor disagree w/ dx. He is having more tests done on the 18th. He said it started w/ drop foot a couple of years ago, so he had braces made to offer more support. His throat has been cramping recently so he was referred to Radiologist??? for swallow test. He took a fall last week and wasn't able to get up w/out help. He's been complaining of atrophy, severe fatigue and seems very frightened which is understandable.
No ALS in our family, so I'm having a difficult time comprehending this disease. I'm in shock, emotionally distraught and angry. We have always been close, having shared the same friends growing up, attended same schools, joined military a few mos. apart and finally lived together on and off as adults because he's had some hard x's. I've read every article I could find and frankly, haven't gained any insight other than no idea what the cause is, it's eventually fatal, meds prolong life by a few mos. and it's a truly horrific disease.
I'm a strong individual, having served in the Marine Corps and dodging my fair share of bullets throughout the course of my life, but I'm not sure how well I'll cope with this because it's too darn painful. I'd rather have this disease than watch the person I love most in my life suffer. Thank you letting me share this and if anyone can offer words of encouragement or their experience, I'd appreciate it.
On a lighter note, I have to thank Gregk for informing me that I initially posted in the wrong place. Scary thing is I read all of the forum rules and directions! I'll keep future posts short, just wanted to explain chronology. Thank you
He had an appt. in Knoxville w/ a specialist for a 2nd opinion who can't agree nor disagree w/ dx. He is having more tests done on the 18th. He said it started w/ drop foot a couple of years ago, so he had braces made to offer more support. His throat has been cramping recently so he was referred to Radiologist??? for swallow test. He took a fall last week and wasn't able to get up w/out help. He's been complaining of atrophy, severe fatigue and seems very frightened which is understandable.
No ALS in our family, so I'm having a difficult time comprehending this disease. I'm in shock, emotionally distraught and angry. We have always been close, having shared the same friends growing up, attended same schools, joined military a few mos. apart and finally lived together on and off as adults because he's had some hard x's. I've read every article I could find and frankly, haven't gained any insight other than no idea what the cause is, it's eventually fatal, meds prolong life by a few mos. and it's a truly horrific disease.
I'm a strong individual, having served in the Marine Corps and dodging my fair share of bullets throughout the course of my life, but I'm not sure how well I'll cope with this because it's too darn painful. I'd rather have this disease than watch the person I love most in my life suffer. Thank you letting me share this and if anyone can offer words of encouragement or their experience, I'd appreciate it.
On a lighter note, I have to thank Gregk for informing me that I initially posted in the wrong place. Scary thing is I read all of the forum rules and directions! I'll keep future posts short, just wanted to explain chronology. Thank you
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